Ultra Trail for Joe and his ELA friends

Grand Duc girlsLast year I promised our lovely neighbour Isabelle that we would run together in the 2013 Grand Duc ultra trail of the Chartreuse mountain range and raise some money for ELA.

I’m sticking to my promise. On Sunday 30th June, we’ll be doing the team relay event: 5 women, four of us from the plateau where we live in St Hilaire du Touvet; Isabelle, Anne-Christine, Marine and I, and then Anne-Claire who lives in the valley. We’ll be doing a total of 80km of trail running, up and down the Chartreuse mountains, with me doing the last 15km leg and hopefully crossing the finish line with Joey in his wheelchair.

We’ve been training together in the snow, hail and rain and thankfully more recently in sunny and hot conditions. Together we’re doing this ultra-trail for Joey and his ELA friends, some of whom are very close to our hearts: Mael in Mont St Michel, Tristan in Paris, Marius in Lunel, John in Lyon, Margot in Bescancon, Laure in St Martin d’Abbat, Natacha in the Midi-Pyrenees, and our two ELA friends whom sadly died this year after their battle against leukodystrophy; Arnaud and little Marlon.  My dream is that one day in the future there will be a treatment and a cure for each of the 34 different types of leukodystrophy.  It’s a lengthy path of medical research and a costly journey but I believe that our continued efforts can one day make this dream a reality.  Since Joey’s diagnosis and during our 6 years as part of ELA we have seen some great medical progress for some of the leukodystrophies.  We want to see more progress and for all of them.

The fundraising started yesterday with a ‘cream-tea’ morning hosted by a great friend, Katrina, who is also Irish and we raised 130 euros from a morning of drinking tea and eating scones and strawberries. Nice training!

Our goal as a team is to raise a total of 2013 euros!

If you’d like to sponsor us, you can either donate direct to our fundraising page or, send a cheque made out to ‘Association ELA’ and send it to me at:

11 bis Chemin des Rieux, St Hilaire du Touvet, 38660, Isere, France

Thank you!

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